Latest News for Parents & Carers

Just six months ago, musician Grace Cope, 19, was unable to perform in front of anyone. Now she is lead vocalist on a song to raise awareness of Tourette’s syndrome and being mentored by a veteran producer who has worked with The Rolling Stones, Led Zeppelin and Duran Duran. Diagnosed with Tourette’s in 2021, Grace, of Bedford, has campaigned for three years on TikTok to reduce the stigma around her neurological condition.

Hundreds of thousands of children with special needs could lose their legal entitlement to extra support in schools in England under plans being considered by ministers, a move that campaigners warn could force thousands more pupils out of mainstream education.

A mother has produced a series of photographs aimed at showing through her son’s eyes what it is like growing up with a hidden disability. Bo Willow Harris took the images for her final project at the University of Sunderland in the hope it would help more children like Hendrix be seen and understood.

Emily’s four-year-old son, Max, from Spinkhill, near Killarmarsh in Derbyshire, has CLN2 Batten disease, a rare degenerative genetic disorder that causes a decline in a child’s ability to walk, speak and see. He is symptom-free and has been receiving Brineura, the only approved treatment that slows the condition’s progress, since he was one.

Jazz Turner has a complex version of Ehlers-Danlos syndrome, which means she can’t bear weight on her legs and her joints dislocate. She also has gastrointestinal failure. She taught herself to sail from the age of 13, and said: “I don’t need anybody else when I am on a boat, it’s only on the water that I feel I have real independence.”